Grumbling Stomach v Patient Care

Last week I had my check-up with the rheumatologist – an annual highlight of my social calendar, alongside sorting the car’s MOT and having a smear. As a rule, these appointments generally consist of 1 part disappointment: 1 part frustration: 2 parts total despondency. They go something like this:

I arrive at the hospital with a well-prepared list of questions – I’m feeling positive, in control and determined to be heard. I queue to get into the carpark, hand over a fresh pot of wee, get weighed and then wait. And wait. And wait. I eventually get summoned.

I sit, he asks ‘So how do you feel?’ and I answer ‘Terrible‘ (that’s always a given). He flicks his eyes across my notes and promptly declares that my bloods are looking good. Less than two minutes after entering the room I am leaving it. All my well-prepared questions are unasked and unanswered, my positivity is completely squashed and my ‘in control’ voice has been gagged and muted. I scuttle off to the ticket machine, often in tears and always fuming – at him for making me feel so unimportant, at my body for being so useless and at myself for not having the balls to speak up more.

Why consultants (particularly male ones) seem to have the ability to render me a pathetic, jibbering wreck who actually feels guilty for taking up their time, is a complete mystery to me. I think perhaps it’s the overpowering God complex they use to hypnotise patients with.

I wonder, do other people also feel ‘sshhhed’ into submission by all-knowing consultants, or is it just me? And what about male patients? Do they let themselves get steamrollered too? Answers on a postcard – or in the comments below!

Anyway, where was I? After a lengthy queue at the machine, I find out that once again I’m over the allocated ‘free’ parking time by 0.2 of a second, despite my appointment having only last two minutes. I also realise I don’t have enough coins to pay. So I leave the queue and join another, having to buy myself a muffin from the overpriced cafe just so I can get some change.

The muffin is invariably dry and totally inedible; it’s the final insult to an already depressing trip. The muffin ends up in the carpark bin, I promptly scrape the hubcap against the pavement while trying to negotiate the hairpin bend of the exit and then, low and behold, I see that the ticketing barrier is permanently up.

Like seriously? Is there anything more annoying than being made to pay for something that you don’t even have to?

On this last trip, for the first time, I decided to take my husband with me for back up. I thought perhaps this might counteract all that testosterone swirling around the room. I also wanted him to experience Dr Complete Lack of Bedside Manner for himself.

Sadly, on this appointment, it was not to be.

Being the last patient of the morning shift, Dr CLOBM (as I shall now refer to him) had decided to skip his customary two minutes with me and head off early. The first I was aware of this was when a registrar called me in and said he’d be filling in for Dr CLOBM as he’d been called away for a ‘meeting’. Had he heck, a meeting with his stomach perhaps. My husband had already clocked him in the corridor, heading for the exit and telling his medical student to go on and get them a table for lunch.

I know! What a bloody liberty! The man only has to see me once a year, couldn’t he have overcome his hunger pangs for the couple of minutes that he normally allows me? After all, there’s plenty of other things I’d also like to be doing with my precious energy rather than queueing up, giving wee, getting weighed and waiting.

As it turned out, he and his grumbling stomach had done me an almighty favour. As the fill-in registrar had not yet reached the lofty pay grade that causes ears to stop working, he actually took the time to listen to me and answer my questions. Even more of a revelation: he asked about the pain I’m in and, for the very first time, properly acknowledged my fibromyalgia. Halle-bloody-lujah.

He examined my hands (never happened before) and tested the fibromyalgia pressure points on my body (certainly never happened before; didn’t even know they were there). He also explained why my memory is currently shot to shit, and how and why my body wasn’t able to deal with the pain. He then referred me to the pain clinic.

Thank god Dr CLOBM had considered himself and his plate of foie gras and chips more important than seeing me that day. For the first time, I left the hospital feeling vaguely upbeat: not because I think I’m going to be ‘cured’ with revolutionary tips on pain management, but because I’d finally been allowed to have a voice.

When you live in a world ruled by chronic illness, where doctors control your drugs, your future and your fate, being ‘heard’ is a monumental achievement – as much as an achievement as when Armstrong went for a stroll on the moon.

So that’s one small step for (chronically ill) me, one giant leap for womankind.

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Disclaimer:

Please be advised the author of this blog has no medical training. If you have any questions regarding SLE, including but not limited to diagnosis, treatment, and living with the disease, you should please contact a medical professional.